Oh, Lordwood.......I wish so much I had read this post yesterday. I am so sorry, honey. I know that does not help. You know that I have been suffering from major depression, too (and I've only had this for 4 months now......I can't imagine how you feel). The RSD messes with our brains. You are right, how can you NOT be depressed with all you're dealing with.

Frankly, I am inclined to agree that he may be limiting his patients to those that have the most promising outcome (it DOES lend more credibility to HIM in that case). It is unfortunate......BUT......I have done a lot of research on Ketamine and it is NOT something you want to be messing with if your brain is already out of whack (even just temporarily). It is really a dangerous and powerful drug. I know of someone who just died after the coma in Mexico about 6 weeks ago.

Go with Plan B. You're smart to have one. Find another place to volunteer, or start writing or blogging. You write SO well, and your story could help someone else. Please PM me when you get the chance.
Much love,
Mom

Yes dilaudid comes in pill forum as well in 2mg and 4mg tablets 4mg is the highest there is and i have had both the 2mg and 4mg tablets and exhausted this drug to its limits only to find it didn't work. I am doing research and going to plan my own course of treatment with the use of my doctors up here in order to attempt to hold me to the fall. I thank you for your post.

Hi I am sorry but can relate to this. I do have mental health issues in my past and now that I have rsd and pn I have had issues with doctors and care because of it. I feel very frustrated and alone. I am the first to say that I have past problems and now of course due to the pain I live in my depression and anxiety is bad but I am in op treatment for that with a psych and it is being managed to the best it can and I feel that it should not effect my physical care. You don't hear of people not being treated for cancer because they are depressed and this should be the same. I can only see this being a problem if one is in such a mental state they are not able to make a choice like this or to have some people in treatment for the mental aspects and then the pain doctor could do his part. Like a team approach. Don't give up. Hopefully through this bad experience good will come.

Hey Lordwood,

You are making a good decision to be an active participant in your care. Don't allow RSD to define you as a person. It takes a lot of patience to work with your meds and doctors to get the right cocktail that works for you. It's hard to stay postitive when you are in so much pain. Keeping stress and anxiety under control has been key for me I take .5 mg of Ativan twice a day and it works for me.
Hopefully you will find the relief that works for you soon!!
Take care,
Sbowling

LordWood,
What Sbowling says is spot on.
I have a question for you.
You tell us things that haven't worked, but, (Maybe I didn't read elsewhere), I don't know how long you've had rsd, if you have tos too, or anything in addition, and, what meds you are taking now, what is your current cocktail?

For instance,
I've had rsd for 25+ years. It spread to what we'd call full body long ago, I also have TOS, and Then got a TBI , and discs, and other things.
My "Cocktail" is
Methadone for pain 50-60mg / day.
Cymbalta pain/antidepressant. 60mg/
Diazepam, muscle relaxant/ de stressor
Zanaflex / muscle relaxant
Namenda, Topomax, Zonegran. nerve pain and anti convulsants
Imetrex (migraine).
From there, meds cross over to the brain injury.

Lots of these are scheduled especially the first few, then some are prn.
as needed.

Maybe, we could help with what you're taking, although I don't think we're doctors, but more than that..
You seem to be looking for an absolute cure.
I don't know that RSD has one.
It's a disease that gets "managed". And, that's all.
Sometimes we do well, sometimes not.
Sometimes the pain is under control, sometimes, it breaks through.

Keep on Keepin On!

Pete
ASB

First of all thank you for your post. While were not doctors in the field of treating ourselves we are truly the only ones which know whats a right path and whats a started out fail. Doctors cannot grasp where were at and there for cannot administer correct treatments its up to us to gain control and word on our own cocktail. Mine has been a mix for awhile but now its down to barely nothing because we had thought i was going for the ketamine, anyway what i am on now:

Oxycontin 80mg 2x Daily
Neurontin 600mg 3x Daily (This medicine is a waste and i still don't know why they keep me on it i was on 300mg 3capsules 3 times a day and now they lowered to this makes no sense to be on.)
Alprazolam(Xanax) .50mg 1 3times Daily

I've been on every med you listed except for Zanaflex which i had skelaxin,
Namenda, Zonegran which i to took Valproic acid, Imetrex.

Iam also on med for my crohns.

I'd like just for it to be under control. But i have seen patients that have been cured. You wouldn't believe how many come out of sherrys program cured and never have to come back.

My thinking is Uping the Oxy to 160mg 2 Daily. Getting rid of the neurontin. replacing it with My Old Dialudid 4mg tablets 1 tablet 3 times a day. Also adding back a stronger dose of methadone. Than increasing my Alprazolam(xanax) to 1mg tablets. I think this is a nice start to finding my way around towards the perfect cocktail.

Lordwood,

Just a thought, have you discussed trying IV Lidocaine infusions with your doctors? It was recommended to me as an alternative to Ketamine. I have had very good results from it as have many other patients here in my city.

It is not a cure but has given me much of my life back. I consider it my part of my rsd maintenance program.

MsL

I'm so very glad to see that you're working this through in your mind. I don't know where you're from, I'm near Philly, and can get to good doctors, rather quickly.
I think you've lost faith in your doctors, which has happened to me before, and lots of us.
You know what you need to do. Which is a great step.
Yes, you're correct, we are the "Test dummies".
WE have to tell the Doctors what's up.
What is quality of life with all this suffering?
The methadone works well for me, with it's adjuncts, and miralax for constipation. (I used to be @ 15mg/ day, after the second accident, went to 100mg/day. Now I'm settled at 50-60mg/day. with the other things).

So, Keep on Keepin' On!
Find a doctor, and, I think that you really got "kicked down" with dr S.
I'm sorry for that.
Don't let it stop your determination to find a better life.
I live in depression, and find Cymbalta good for pain relief too.
(After ALL the other ones, but still, you hafto find what works for you).
I hope you have or find a good pain management psych.
A good neuro,
and keep it moving!

The triangle of RSD care. that I've stated before.

I wish the best for you, and will keep you in my prayers!

Pete
ASB

Just a thought
 

Lordwood,
So sorry to hear about what you are going through-I can feel the frustration in your "voice" and I share it in many ways. Months ago I was begging to find some way to get Ketamine for myself and in a desperate state of mind. Please look at what Ketamine actually IS and what it is used for. This is a drug that poses significant system depression while you take it. Despite feeling angry myself that I wasn't able to get it, there is a factor in it's worsening depression AND inhibition, which can be a dangerous combo. Consider that Dr. S is making this rule for the safety of the patient and not to cook his books. Ketamine is still very contorversial and no one will ever get it if he cannot report adverse effects or gets slammed with a "this drug makes depressed people suicidal" black box. Ketamine is still considered experimental and Dr. S walks a fine line in that way without FDA blessing. Believe me, if you read my old posts, I am far from an advocate of the medical community (despite being a nurse for 16 years), but I have given Ketamine before for sedation and it is not Tylenol.
Lori Lee

By your reasoning All RSD patients should not be allowed Ketamine as there is no true RSD patient that is not depressed. I know what ketamine is and its abilities. As well i know ketamine is not like tylenol as tylenol is not a medication at all in anyform no matter what dose. For any rsd patient wanting treatment with ketamine i would strongly recommend Dr. Harbutt for ketamine as his program is far more professional and more accurate with the success rate. Dr. S is not an RSD doctor he is simply a member of a group that found ketamine might work for a number of things to which RSD was added to the list. He is nothing more than a partner as ketamine is all he has and nothing else.